[susiemagoo]

Hello,

I have been unable to find the old braintalk.org site and stumbled upon this "new" forum. My son first exhibited MG symtoms at the age of 10 and we went through many doctors and hospitals before we finally got the MG diagnosis. I met many wonderful people through the old forum and hope I will find some of them here. Everyone was wonderfully supportive and helped us through some very tough times.

I was on a plane today and sat next to a teenage girl and her mother. They were bound for Rochester, MN for an appt. at Mayo Clinic. My son's Mayo experience was a nightmare, but talking with this girl and her mother brought back such strong memories of my son's ordeal.

Fortunately, my son's MG has been fairly mild during the past few years and Mestinon usually keeps things controlled. I am always wondering, however, if and when "the other shoe will drop." My son is almost 18 now.

Anyway, I'm delighted to have found this forum and hope I can be of help to those struggling with trying to get a definitive diagnosis or just trying to get through the day.

I am going to stay in contact with the family I met today and hope they can find a diagnosis for the daughter's symptoms. This poor girl, now 18, has been having small seizures and passing out for the past two years. When she regains consciousness, she can't talk at first and her legs become numb. She described the feeling as "feeling like she has marbles in her head." She had 2 such seizures during our short flight. It doesn't resemble MG, but certainly seems neurological in some part. To date, all EEGs have been normal, but no doctor has been able to pinpoint the problem.

If these symptoms ring a bell for anyone, please post a reply.

Thanks in advance.

Susie (Mason's mom)

[Alffe]

Hi Susie and welcome to Neuro Talk. Here are a couple of links...one to our MG forum...http://neurotalk.psychcentral.com/forum77.html

and another to our Epilepsy and Seizure forum...http://neurotalk.psychcentral.com/forum11.html

You'll find a lot of good information there and friendly faces too!

[AfterMyNap]

Hi Susiemagoo! Welcome to NeuroTalk!

[DM]

Hello Susie and Welcome to NeuroTalk. Please make yourself at home and join in anywhere. You sound like a very caring person, so you'll fit in just fine.